I Hate This Diagnosis

Mentally this is shaping up to be my most raw post yet. It is where I will lay all of my hurts on the table. As only a few people read this blog, and they might not even be people I know, it is safer than posting on FaceBook where I would be subject to critics. 

Sometimes in life I just want support. Unending support. Uncritical support. Just love and compassion without being told what I should do or how my feelings are wrong. 

Friendship.

Kindness.

There are several areas in my life where I need this, but the one bubbling up to the top and nearly paralyzing me into inaction is the diabetes diagnosis I received five years ago.

It still hurts.

Over the years I have gone to several different doctors, and several different types of doctors.

The endocrinologist told me I'm fine, keep doing what I'm doing. And how do I think she should redecorate her office?

Great advice, even though I could see my A1C was fine with diet, but other numbers seemed out of line and should be addressed. Plus, the only way I could keep my A1C that low was by eating very few grains and sugars and I'm tired of that life. Plus, she was expensive because my insurance plan does not cover specialists.

The next doctor, my regular general practitioner, also said my numbers were good, but at least she didn't charge me an arm and a leg.

Last fall I decided to see a holistic doctor who swore she could cure my diabetes with a bunch of supplements. She is not covered by insurance, but who wouldn't want to hear about a cure? Several months later, and many supplements later, I suggested a blood test she said it was too soon. Instead she suggested a patch that checks your blood sugar throughout the day. The end result was for that two week period my A1C was higher than when I started the supplements (now sometimes were skipped because of how the patch worked, and I was trying new foods because I was getting immediate readings).

My sister insists I should test frequently because it is not a "test," but a data point. I understand what she is saying. It took me a while to realize why I don't agree with that plan. 

It is because with the data point, there is nothing I can do. I am helpless if it is high. It is never low, so eating a cookie won't help. Instead I have to wait for it to come down, all the while stressing about the data.

Should have mentioned sooner stress is my biggest trigger.

My highest number during the two week patch time was walking past a pizzeria lamenting that I can't have pizza because a) it is too high in carbs; and b) it has gluten and just before starting the two week time I was told to avoid gluten obsessively because I have a gluten intolerance that shows up in blood work, but does not hurt my stomach the way most people do -- therefore I don't even know if I've eaten anything with gluten. Meanwhile, I should also avoid corn and peanuts.

So my goal of going to the holistic doctor backfired in spades. It was very expensive PLUS more foods were eliminated instead of added to my diet. Huge hunks of food like gluten, peanuts, and corn. 

The kicker, though, was when she told me she thought I had a genetic form of diabetes, such as MODY, and she was looking into that. 

If I didn't clearly remember telling her I thought I had MODY back in October when we first met, and now it was January, and thousands of dollars had passed hands, I might have had some feeling that this would work out.

Next up, Don and my mom suggested I leave the holistic practice and see an expert endocrinologist at U Penn. U Penn has experts. They did not match me up with one who is an expert in genetic diabetes despite my telling them in the introductory letter that's what I think I have. 

It also took several MONTHS to get an appointment. It took several WEEKS to get them to schedule an appointment because they needed to match me with the exact right doctor.

I finally saw their doctor via telemedicine in early May. 

She declared it could not be genetic because I was too old when diagnosed. It was just normal diabetes, even though we could not identify any reason why I would have it. There is a strong genetic component. She wrote a script for blood work to take place over the summer to see if that was it. Meanwhile take four Metformin pills a day because that is the gold standard for diabetes treatment. Take one a day for a week. Two a day for a week. Three a day for a week. Four a day for week. 

I argued that seemed like too much since my mom only takes three a day and my A1C isn't that far off.

No, no, no do it our way.

Day three of taking Metformin I woke up with massive vertigo. Could not walk from the bed to the bathroom.

I sent the U Penn doctor an email. Two days later the response was I should test myself. Um.. okay. I did that hours later and it was a little high, but not hospital high. Now what? Crickets.

Meanwhile Don found a new doctor to try. She is a holistically trained endocrinologist in Princeton.

What a concept! I wish the holistic doctor in Lawrenceville suggested this practice in January. Then I'd be on a path

She looked at the same information I sent to U Penn and said it is clearly a genetic form of diabetes. She looked at the test results from the holistic doctor and ordered a few more -- few being four vials. She was actually building on what I have already done.

Now I wait. Now I feel I have someone who cares. She signs her messages with her nickname, instead of doctor. She answers my messages and concerns. I feel as if she is on my team.

I'll see her soon. I'm still scared about the results and what it will mean for my life. I don't want diabetes to control my life. I don't want to have to constantly figure out what I can eat, and alter my life around it. Especially as my biggest trigger is stress and this really stresses me.

Thank you for letting me write. If you made it this far, send me a prayer for peace as I take this next step. I know I finally have a doctor on my side.